Keppra increase

Since my last post, we have increased his Keppra to 2.0 ml, twice a day. He went through a tough time with bigger seizures so we had to do the increase. Thankfully, this really helped his seizures. He still has many daily seizures, but they are back to being small again. He seems to have bigger seizures during sleep, though. As expected, the Keppra caused John to be a wild child for awhile. He would change moods instantly, and get very easily frustrated. He would bang his head against the floor or wall to the point of hurting himself. This lasted for a few weeks, but is slowly getting better.
School is going fine. He has really taken a liking to two of his teachers. I think he enjoys his school and is doing well.
There is a lot of snow around here now, and John has been having a lot of fun playing in the snow. Mostly, he just loves to eat the snow. I'll post pictures later. The good news is that he wears his hat and gloves without any issue now.

Dr. Visit

We had an appt. with John's neurologist on Monday. We got his VNS turned up to 1.5mA, on for 30 seconds, off for 3 minutes. We're also going to increase his Keppra to 1.5ml twice a day. John has been sick since Monday, so we are holding off on this increase until he feels better. Hopefully, these changes will help with his lingering seizures, and also his development.

Cycling

I finally got up the nerve to try riding with John. Of course he loves it, and wants to go every day. I still worry about him having a seizure while riding or trying to jump off while we're moving. So far, he has been OK, though. He hasn't learned to pedal yet, but we're working on it. He likes to stand on the pedals and try to grab things as we go past, which of course makes the whole thing quite unstable. So, we keep it real slow.




For some reason, he really wants to ride Yoshie's bike. Of course it is way too big for him, but he still loves to have me push him around on it. He won't ride his little bike anymore. We'll have to get training wheels for Maya's bike and see if he'll ride that one.

First day of school

I'm a little late posting about John's school, but here he is on his first day of first grade. This was also Maya's first day of fourth grade:



John takes the bus for about 30 minutes each way. Here he is looking a little nervous on his first day:




So far, school has gone pretty well. At least we haven't been called to pick him up yet. :)
I think he's a handful for them, especially on the playground. The teacher has been really good about keeping us up to date with what he does each day. I stopped by the school one day when we forgot to give him his morning medicine and he looked happy.
He is getting a little too comfortable on the bus, and they have had to use the harness seatbelt to keep him in his seat. I don't like that, but safety first I guess.

Done with Felbatol

On Aug. 27, we gave John his last dose of Felbatol. So, it's been almost a month now, and we didn't really see much change. He still has seizures every day. Some days we see just a few, other days we see a hundred or more. But, these are still all the brief myoclonics and haven't progressed any further. John is currently only taking 1.2ml of Keppra twice a day. We see the neurologist again next week. I'm guessing we'll increase the Keppra, or change the VNS settings to try to reduce the myoclonics that he is having.

Felbatol reduction

John's myoclonic seizures have been getting slightly worse all summer long. He's still doing great, but we felt it was time to show the doctor what he was now experiencing.
We sent him these 2 videos:





After seeing these videos, he agreed that these were definately seizures (something he wasn't willing to admit a few months ago). Despite this, we got the OK to lower his Felbatol level, and hopefully get rid of it altogether in the near future. He just said to watch John carefully and if he starts falling or having Tonic-Clonics then we need to stop the reduction. It's been almost a week since we lowered the drug to 1ml, twice a day, and we haven't seen any problems yet.

Summer trips

Here's some pictures from our road trips last week:


Trillium Lake






Trillium Lake




John has been a good car traveler lately.




This is actually at our local rec center




At the beach. John got soaked.




Hotel pool




Big chowder at Mo's





Dodge Park





Eating some Haagen Daz

Summer 2008

I haven't posted in awhile. As usual, that means things are pretty much unchanged from my last post. John continues to have several clusters of myoclonic seizures every day, but he doesn't fall and seems to recover quickly. So, these days, we are much more focused on his development than his seizures.
John remains on 1.2 ml of keppra twice a day and 2ml of Felbatol twice a day. We might ask about lowering the Felbatol a little more. We don't want to interfere with his relatively good status these days, but we sure would like to do all we can to help him learn.
John turned 6 in June and he had a party at a local climbing gym. He wouldn't wear the harness, so he didn't get to climb any of the big walls, but he had fun running around and climbing the small walls.
Yesterday was the last day of summer school. I think he was just getting used to it in the past week or so, so it's too bad that it is over. He starts first grade next month at a special needs class about 15 minutes from our house. We hope it works out well, though we have out doubts.
He has also been receiving private therapy from 2 different therapists. We finally decided to drop the one that was 90% covered by insurance and stick with the other one that we think does a much better job. It's expensive, but worth the extra cost. Since John still rarely says anything spontaneously, we are trying other methods to get him to communicate. He's been doing quite well with the picture exchange system, and does a little sign language. We're also looking in to getting him an electronic device where he can push buttons to let us know what he is trying to say. We have a specialist coming to our house in the next couple of weeks to evaluate John for these devices, then if that goes well we'll try to get insurance to cover this as they are very expensive.
I'm on vacation all next week and we'll be taking some car trips and hopefully getting in some things that John enjoys (ie swimming!).

lots going on

It's been a while since I've posted, and quite a bit has happened in the last month.
We have continued to lower the Felbatol level. He is now at 5ml/day, down from a high of 12ml/day last year. John does continue to have a lot of the myoclonic jerks. In fact, they are getting more frequent and a little stronger. But, since these seizures don't really seem to phase him much, we're opting for the lower drug level anyway in the hopes that it will help him to learn.
John does seem to slowly make progress. He has taken an interest in picture books finally and will usually repeat the words. He still has a hard time pointing at a picture when asked, but can sometimes do it with real familiar objects. He's getting better and better at riding his bike, but still needs someone to walk next to him at all times. And he refuses to wear a helmet, which we have to rectify soon.
It's been over 1 year now since we've seen a grand mal seizure! That's a pretty good milestone. I just wish we could get rid of these myoclonics as well.
And, it's now been 4 years since this whole thing started.

We got John's placement for 1st grade awhile ago. We visited the school and we weren't very happy with it. John was placed in the lowest level of special needs. It's really sad to go visit those classrooms. We tried to fight it, and had another IEP meeting, and visited another school. Unfortunately, the other class was just as bad or worse. So, after all that we ended up back with the original placement. They explained all of the different levels of special needs and it just didn't seem like John fit in any of them. So, the default is to put him in the lowest level. We'll continue trying to push John. It's our hope that he can learn to communicate better and we can eventually get him in to a better class. It's hard to believe my son belongs in that class, especially since he was so bright in his first couple of years. It's amazing how things can change so quickly.
John's birthday is coming up, and we're going to have a party at a rock climbing gym. I'm sure he'll love that!
School gets out for the summer this week. John will be in summer school for 6 weeks, and we have 2 other therapists that he will be seeing. Plus, Maya is signed up for swimming, cooking class, pottery, Japanese school, and piano. So, the summer will be busy!

Felbatol level

At our last doctor visit, we had a chance to see the EEG and how it correlated to John's seizures. John is definately still having seizures, but for some reason the EEG does not go crazy during the times that we see the seizures. It's pretty bad at other times though, when we don't see anything. As bad as his EEG is (especially during sleep), it's still a big improvement over his previous EEG's. Because of this, and the fact that the seizures he currently has don't seem to phase him that much, we decided to slowly lower his Felbatol. Since it's clear we can't stop the seizures completely with the drugs, we'd rather have him on fewer drugs even if the current seizures get a little worse. Obviously if he goes back to having Grand Mals or drop seizures we will do anything and everything to stop those. I don't think that is going to happen, though.
So, as of today John is on 6mg per day of Felbatol. This is exactly half of the dose he was on in December. So far, we haven't seen any real worsening of the seizures. And, I think we have seen some real improvements in other areas.
Talking is just not John's thing, but he seems to understand more and more of what we tell him. He also can almost ride his bike now (with training wheels). I tried forever to teach him how to pedal but he just couldn't get it and really wasn't interested. He's finally getting the hang of it, and actually likes to ride his bike now.

Climbing

On Saturday, our friend Rick offered to take us to the Portland Rock Gym. He knows how to do the belaying, so John and Michael (his son) got to take turns climbing the big walls. Of course John loved going up.


I got a little worried when he got way up there, as I didn't know if he would try to go over the edge. So, Rick tried to get him lowered, but he wanted none of that and became frustrated. Finally he just kind of camped out up there and started humming "I'm a little teapot". He ignored my requests to come down. A worker finally went up and coaxed him down. In hindsight, I suspect he would have come down on his own if we had let him go to the very top. But still, I felt a little helpless since there is no way I could go up after him. I think Yoshie and I are going to take the class so we can do the belaying next time. I'm guessing Yoshie and Maya would also enjoy the climbing.

VNS

Here's a picture of John with his new VNS. You can see that it is significantly smaller than the previous one. I think the stitches itch him, as he's always trying to get pick at them.

EEG and VNS surgery

Everything went as planned. We are back home and John is doing fine.

We arrived at the hospital at 7:30 Monday morning. No mix-ups this time, so we got a room pretty quickly. The tech came in pretty early to glue the EEG leads on. As expected, this was the worst part of the whole day. It took several of us to hold him down and he was pretty unhappy for the 45 minutes or so that it took.










He started having seizures right when she was finished, so we had the tech start recording immediately. So, the first few seconds of the recording should have at least one seizure on it. Surprisingly, once the leads were all on and his head was wrapped up, he didn't seem to mind. He carried on as usual just watching videos and running around. He only tried to grab at his head a couple of times, and we were able to distract him pretty easily.







We didn't see any seizures for most of the day, and we were getting worried. But, he did finally have a small cluster of seizures in the evening. This was much smaller than we normally see, but we were hopeful that it would be enough to determine if there was a focal point or not.
John wouldn't allow anyone to take his vitals. He especially hated the blood pressure cuff. They finally had to give up and do it in the middle of the night while he was sleeping.
John had to give blood around 8:30, then I went home. He didn't sleep very well, and was awake for a couple of hours during the night, so John and Yoshie ended up very tired on Tuesday.
I arrived back at the hospital at 5:45am, just as the tech was coming in to remove the leads. Of course John didn't like this, but it went pretty quickly. He enjoyed his freedom after that and we spent some time walking around the hospital. As expected, he had a significant cluster of seizures during this time.
Just after 7:00am he was wheeled down for surgery. He took his calming medicine without problem this time. Whew! Last time they had to resort to forcing it up his nose. He got very drunk-like, and they took him away at 7:55. Yoshie and I went to wait in the surgery waiting area.
John's neurologist found us in the waiting area and gave us the results of the EEG. Apparently, his team had already studied them that morning. He said overall that John's EEG was dramatically better than it ever has been. He said that his brain wave rhythm had matured, and the background slowing had improved. He said there were times of some normal sleep rhythms - maybe for the first time ever. And, he said the the seizures themselves were far less severe. In fact, he said that if he were basing his findings on the EEG alone, he probably wouldn't classify these discharges as seizures at all. Since these discharges are associated with head drops, they are certainly still seizures, but are a big improvement over the seizures he's been having for the last 3 years. He said that he and his team believe that John's seizures originate in the thalamus area of the brain. This is an area deep in the brain that cannot be accessed. So, that obviously rules out any more testing for a surgery option. He said the best course of action for this type of seizure is VNS and drugs, which is exactly what we're already doing.
We don't know why John got better. It could be the Keppra, or it could be that he is just growing out of this. We also asked about John's lack of development, even with this improvement. He said that it could very well be the underlying issue that is causing all of this. Or, it could be the drugs that John is on. So, he said his goal is to get John on as little medication as we can, which was music to our ears. John really has seemed more alert since we lowered his Felbatol level, so we're really hopeful that further lowering this drug will help even more.
While we were talking to the neurologist, the neurosurgeon came in and told us that everything went fine. He said the leads were OK, so they only needed to do the generator replacement. He said that John was already starting to wake up so we'd be able to see him soon. That was 9:30.
At around 10am, a nurse came out and told us that John was just starting to wake up, and we'd be able to see him soon. She had us go down and get his new prescriptions (antibiotic and pain meds) while we were waiting. Around 10:30, the neurologist came back and said he had just turned on John's VNS. He set is really low compared to what it used to be. It is now set at 1mA, on for 30 seconds each 5 minutes. He said we'd increase it in a couple of weeks but he has no intention of going to the type of settings that John had previously. He also said that John was waking up and we'd be able to see him soon.
At 11:10, I finally asked reception for a status and they were able to take us back to see him immediately. Sure enough, he was half-awake. We tried to get him to drink some liquids so that his IV could be removed (it was driving him crazy). He watched a little TV, and fell back asleep.









At around 1pm, the nurse came and said we could wait for him to wake up, or we could take him home and let him sleep. We opted for the latter. I carried him down to the car and we went home. We were home by 2pm. Once we got home, John went back to his normal ways. I actually had to stop him from climbing his climbing wall and jumping off the couch. It was as if nothing had happened to him. We didn't even give him any pain medicine until bed time as he didn't seem to be in any pain.
Today (Wednesday) he seems completely fine. He doesn't know that he has a big cut in his chest, and we're hiding it from him. I think if he saw it, he would try to remove it. But, it doesn't seem to bother him at all so far. I gave him a dose of the pain med first thing in the morning, really just as a precaution. I'm guessing we won't have to give him any more at all. We even got out for a little hike today. He grabbed some stinging nettles, which is bothering him more than anything right now. So I think it is fair to say that it all went better than expected.
We'll go back in a couple of weeks to increase his VNS settings, and then we'll hopefully start decreasing the Felbatol shortly thereafter.
One really promising sign is that the VNS magnet has appeared to stop John's seizure clusters on two occasions today. I have a good feeling that we're going to be able to go to just the VNS and a low dose of Keppra for long term treatment.

EEG and VNS

We went in for John's EEG last week, but there was some mix-up and we were finally sent home and forced to reschedule. We got rescheduled for next Monday (Feb. 25) at 7:30am.
Today, we met with John's neurosurgeon to discuss replacing his VNS. We got some x-rays taken just to make sure the leads were still OK - they were. And, it turns out that they had a cancellation and were able to get John in next Tuesday for the surgery! So, his EEG will go from Monday morning to early Tuesday morning, at which point they'll remove the leads and take him right to surgery. It will be a rough couple of days, but nice to get it over with all at once. If all goes well, the surgery will take less than 30 minutes and we'll be home Tuesday evening.

In other news, John really seems to be doing better on the lower Felbatol dose. He just seems more "with it". Thankfully, we didn't see any increase in seizures at the lower dose either. So, we're hopeful that we can lower it even more after we get the VNS working again. John has continued to have daily clusters of small seizures, but I don't think they have gotten any worse since my last post.

John seemed to like school for months. But, for some reason he cries when you say the word "school" now. The teachers say he is fine after awhile, so I guess it's just separation anxiety. We're not sure why it suddenly came on, but it might also have something to do with his reduced Felbatol level. John knows the route to his school, and he'll cry as long as you stay on the same route. If you turn off course at any point, he quits crying. So, some parts of his brain seem to work quite well. Sure hope the language part starts working one of these days.

Not a lot has changed seizure-wise since my last post. John continues to have at least 1 cluster of seizures every day. Each cluster has between 5-12 seizures. The cluster lasts a couple of minutes, and the seizures themselves are just head drops. We have lowered his Felbatol from from a high of 12ml/day down to 9ml/day. We didn't see any change in his seizures, so that is good news. I feel more comfortable with this lower dose.
Since we lowered the Felbatol, we think John has gotten more talkative. He babbles a lot now, and sometimes seems to say words that make sense, though its never clear so we can't be sure. He has also started to cry non-stop at school lately. Yoshie had to pick him up twice this week. He's always seemed to like school, so we're not sure what changed. Yoshie suggested that maybe he is just a little clearer after the Felbatol reduction, so he has a some separation anxiety again.
John has also been going to speech therapy twice a week at our local university. I had a chance to observe him the other day. It's really more like play time than therapy, but at least he likes it. So far Yoshie has had to remain in the room most of the time. Hopefully that will change soon.

We had an appt. with the neurologist on Monday. As expected, we got an appt. for another "24 hour" EEG. We'll be doing that next week. He told us that he still believes John's seizures are generalized, but there is a 25% chance that they could be focal. It was enough of a chance that we decided to pursue it. If the EEG shows a focal point, then we'll have another MRI. If the MRI shows something in that area, then we'll continue with further testing. The end result would be a surgery to remove that section of the brain. But, there are many, many steps before we get to there and if any step along the way doesn't show a clear focal point, then we'll stop. The chance of actually getting to the point of a surgery is very small.
After the EEG, we are also going to increase his Keppra slightly. Since it has worked so well, I think there is a decent chance that an increase will help him.
Finally, the VNS is completely dead, so we'll be getting that replaced shortly. As always, we only want to do one thing at a time, so it might be another month or two before that gets done. We got to see the new VNS, and it is remarkably smaller than his current one. It also has more functionality. We're not looking forward to putting John through another surgery, but this one is low risk. I doubt we'd even have to stay overnight. The hardest part will be keeping John from poking at the incision.

Christmas

Yoshie and Maya are in Japan this week, so John and I have been having fun playing with our Christmas toys.














We even got a little snow on Christmas day, which John loved. I hope it snows again soon!










John's seizures are slowly but surely getting worse. He has at least one cluster every day, with the seizures getting a little stronger. He sometimes laughs after the seizures. I guess they feel funny. We raised his Felbatol last week, and that clearly didn't help. So, we'll begin lowering that again soon unless the seizures disappear. I'm sure that John will get his VNS replaced in the next few months.

seizures return

John has started having seizures pretty much every day now. They are still really small, but come in clusters again. We can only assume that this is due to the VNS battery running out. So, we'll probably have to get the battery replaced sooner than later.
In the meantime, since it is getting worse, we felt we had to do something so we have added back a little of his Felbatol that we recently removed. If this doesn't stop the seizures, then we know the Felbatol wasn't the key and we will start removing it again.
Outside of that, everything is going well. John still seems to enjoy school. He started shaking his head for "No", which is something they must have taught him in school.
We have still been having some in-home speech therapy, which has been great. And, we finally got John in to the speech therapy at the local university. He'll be going twice a week (after school) for the winter term.
We made yet another trip to the urgent care clinic last Friday, after John got his feet tangled in Christmas lights and fell head first on to the piano (we think, as we didn't actually see it). He cut his head, and it was bleeding like crazy. We had no idea how bad it was, but by the amount of blood that came out I assumed it was bad. But, after they cleaned it up, it was just a little over a centimeter long and didn't even require stitches. I guess head wounds just bleed a lot.
And we actually got accepted for a grant to install a video camera in his room so that he can sleep and we can monitor him and record any activity. We'll try to get that installed shortly.
Yoshie and Maya are off to Japan next week, and I have the whole week off work to take care of John. Should be fun!

doctors comments

Our neurologist got back to me on a Friday evening, just an hour after I e-mailed him. Wow.

He said the high felbatol level was not worrisome, as it was taken just a couple of hours after John was given a dose. The reference range refers to the level first thing in the morning. Still, he said to go ahead with our reduction of the Felbatol. So, we took out 1 ml in the morning, starting yesterday. We're crossing our fingers that he remains seizure free. I think he will.

As for the EEG, he said it was a big improvement over the last one. In his words: "I'm pleased to see that it's tremendously improved from John's prior studies, including the video-eeg from 2004. His waking background looks dramatically better than before."
Wow, that is great news! It's the first time in 3 years that we've heard that things are better than before. Let's hope he's turned the corner and will continue to improve.

As for the focal point, he said that the focal point is for discharges and may or may not also be a focal point for actual seizures. If the seizures return, we'll get an extended video EEG to see if the seizures also originate from this focal point. Still, it's definately different than his previous EEG's, where the seizures and discharges came from everywhere. He also said that he took a look at John's most recent MRI and there was nothing abnormal in that area of the brain.

EEG results

His EEG showed some interesting things. It's still very abnormal, which is no surprise. But, it looks like he has more discharges while sleeping, which was a bit of a surprise to us. We've never seen a seizure at night.
The big news is that it looks like there might actually be a focal point!! He's had quite a few EEG's, and this is the first that showed any indication of any focal point. Of course a focal point is really big news, because if you can clearly identify the exact focal point, it's possible to actually go in and remove that part of the brain. But, that's a long way off and we don't want to get ahead of ourselves. We're hoping that they might be willing to do further testing, though.

Here's the full text of the EEG report:

Introduction: This is a routine electroencephalogram performed on a 5-year-old with history of seizures since age 2, which have significantly improved with vagus nerve stimulation [note: not true, it was the Keppra!]. Last seizure was reported May 2007. Medications include Keppra and Felbatol. The standard 10-20 system of electrode placement was used with one channel of EKG monitoring.

Description of the record: During periods of relaxed wakefulness, there is a posterior dominant rhythm which consists predominantly of 7Hz activity of moderate amplitude, with lower amplitude faster frequencies present symmetrically in the anterior head regions. Reactivity to eye opening/closure is not demonstrated.

Although waking background is somewhat obscured by muscle artifact particularly in the frontal regions, only rare to occasional sharp and slow wave discharges are seen with phase reversal at FP1. These appear to increase in frequency as likely drowsiness is entered, suggested by decrease in movement and muscle artifact.

During sleep, these discharges occur frequently. Although at times they are near-continuous, occurring at 1 to 2 hertz, there are usually several seconds in which no discharges are noted. At times there is a broad field to these discharges, spreading to the left temporal and central regions.

Vortex sharp waves and spindle activity of sleep are seen.

EKG shows normal sinus rhythm throughout the recording.

Impression: This is an abnormal EEG for age recording wakefulness through stage II sleep due to mild diffuse background slowing, and left frontopolar epileptiform discharges which increase with sleep.

Clinical Correlation: The diffuse background slowing suggests diffuse cerebral dysfunction, though not specific as to etiology. The left frontopolar epileptiform discharges suggest a focal and possibly rapid secondarily-generalized mechanism of onset to the patients seizures.

Blood results

I just got John's blood test results:

White cell count, hemoglobin, hematocrit, MCV, RDW, Platelet Count, Iron levels, and Lead levels were all fine.

His red cell count was slightly low at 3.87, with a normal range of 3.90 to 5.30.

MCHC was slightly high at 35.6, with a normal range of 33.4 to 35.5.

His Keppra level was 9, where the range is 5-30, so he's still on a really low does of that.

Felbatol was 79 ug/mL, with a reference range of 30-60. So, he's on a LOT of Felbatol. We have already talked about lowering this a little, and I suspect we'll be advised to start that reduction shortly.

So, outside of the high Felbatol (which was absolutely no surprise to us), everything looks pretty good. We're happy to see the lead and iron levels checking out fine.

EEG

John had another EEG this morning. As always, it was pretty traumatic for him to have to lay there while the leads were glued on. It gets harder each time, as he gets stronger and louder. We had to wrap him up tight and have 3 of us hold him down just to get the leads on. It was pretty torturous for about 20 minutes. He finally wore himself out and fell asleep.
The EEG itself clearly showed seizure activity. The technicians can't tell us anything, of course, but anyone can tell that when the lines go from almost flat to a wild storm that something is not right. We'll get results next week, but if I had to guess I'd say it was still very bad, but probably a little better than last year. At least this year we could see a few stretches that lasted 20 seconds or more without a discharge.
I have no idea what the doctor will recommend after this. I don't know if he will want to go up on drugs, quickly replace the VNS, or to just leave things alone as John is doing really well these days.
Hopefully he won't need to do another EEG anytime soon. That is honestly the most upset I've ever seen him. He was so worn out that he had to miss school completely. But, true to form, he's back to being completely fine this evening. His parents are still pretty worn out, though.

Halloween

We went to Eric and Amy's for Halloween again this year. Maya had a good time trick-or-treating (after recovering from her fall). But John just isn't the least bit interested. He got frustrated right away and only wanted to put leaves in to the storm drain. So, he came back home early and had fun playing on the stair railing.

We were thinking that maybe spider-man would have been more appropriate than batman.

VNS is almost dead

John had a neurologist appt. on Thursday. We had his VNS checked and it is almost dead. He said that it likely isn't even giving the full charge right now. So, we have to decide whether to replace it or not. Since John is doing so well right now, we are going to hold off on replacing it. If the seizures come back, we will have it replaced quickly. We're hoping to hold off until the new version of the VNS comes out. It is much smaller, and has more features. It should be available in the next 6 months.
The neurologist is very concerned about John's inability to concentrate on anything. He kept trying to blame the Keppra, but I kept reminding him that John was already like that before the Keppra. I really don't want to decrease John's Keppra dose, as this drug has worked miraculously for him. We might go down on the Felbatol just a little, but he didn't think that would make much difference.
We talked about John's Pica (craving ice and other strange things). He agreed to have John's iron levels checked again, though we're not expected to see any thing out of the ordinary.
John had to have quite a bit of blood taken for all of the tests. It left him pretty worn out. And, we saw a little head-drop in the evening. So, I guess the seizure-free streak is over. But, that can barely be considered a seizure, and we haven't seen anything since, so all is well.
Finally, John has to have another EEG on Thursday. He hates those things. I really hope that we will see some improvement, but honestly I don't think we will.

John Climbing

I haven't updated in awhile. This time no news is good news. It's now been over 4 months since we've seen a seizure. It's kind of amazing really.

He's been making some progress with his speech, but it sure doesn't come easy.

Kindergarten is going OK. He was sick for quite a bit of the first few weeks so he missed a lot of school. But, he's fine now and seems to do OK. We really don't know what goes on at school, but the teachers tell us he's fine, and he seems happy when he gets off the bus in the afternoon.

He continues to climb everything. Here is his latest trick:

We also added to his climbing wall. He uses this all day every day:

1st day of kindergarten

John had his first day of kindergarten yesterday.

He was crying when we left in the morning...

, but was smiling when he got off the bus in the afternoon.

We have no idea how he did, but he came back wearing the same clothes, and with most of his lunch gone, so I guess he did OK.

100 days!

It's hard to believe, but we haven't seen a seizure for 100 days!

And, John starts kindergarten on Tuesday. He'll be in class from 8:30 - 2pm, then will ride the bus home. That is going to be a real change around our house. Hopefully he will enjoy it.

We just got back from a week-long trip to Canada. John did surprising well on the 11 hour car trips. He had a meltdown or two on the trip but was mostly very good. He got lots of chances to play in the water, and throw rocks in the water (his favorite thing).

John has completely stopped biting, and has mostly stopped pinching. When he gets upset, he sometimes goes to his room and lies down. He's even fallen asleep a couple of times. I'm glad that stage is over.

John continues to see a speech therapist a couple of times a week. He is doing pretty well with the PECS. He still isn't learning any vocabulary, though.

75 days

The big news is that John has now gone 75 days without a noticeable seizure. Woohoo!

Because of his success, we haven't changed anything with his medication or diet.
We haven't seen any real improvements in his development, which is a little disheartening. But, we have started some new learning techniques, including PECS (picture exchange system) which he seems to do pretty well with. We have pictures of some of his favorite things sticking to our refrigerator. When he wants something that is pictured, he takes the picture and gives it to us. We usually have him point to the picture, and say the word if he can.

As always, John loves the outdoors and spends a lot of time in our backyard. Here he is muddy from head to toe.




The bad news is that John's temper has gotten completely out of hand. He's happy most of the time, but when something upsets him he just spirals out of control and can't regain his composure for a long time - up to 30 minutes. He bites, hits, and throws things. If he can't find someone to bite, he'll actually bite himself. He's strong, so even I have a hard time trying to contain him when he gets in one of these tantrums. He bit our therapist pretty badly. He's bitten and hit Maya very hard. Of course, Yoshie gets the brunt of the abuse. Check out this bite to her arm:



John finished up his preschool last week. He'll start kindergarten next month. He currently gets in-home speech therapy twice a week.

Like I said, John loves to be outside. He had a great time playing at the beach last weekend:



When it was time to go, he threw his biggest tantrum yet. It was a real challenge to try to carry him off the beach. We had many astonished onlookers. After 30 minutes of this, he finally calmed down and we were able to do some shopping. But, it wore us out completely and we headed home early.
We visited the neurologist 2 weeks ago, and John was pretty bad in his office. So, he suggested that we trial B6 to see if it would help with the tantrums. John has been on 50mg of B6 for years, so we increased that to 100mg. It hasn't helped yet. We actually forgot the B6 one day and John seemed to have his best day, so we're considering trialing a week without any B6. It's probably just coincidence, but who knows? Our neurologist has said that the tantrums might actually be worse than the seizures for some people, so we might consider decreasing his meds and accepting a few seizures. We're definitely not ready to go there at this point. I'll take temper tantrums over seizures any day.

John Climbing

John has now been seizure free for over 5 weeks! We have seen some odd staring that worried us a little, but nothing that I would classify as a seizure. So, it's been a very nice break for us. Still, he is a handfull. He's incredibly active. It's hard to explain. I followed him around for just a few minutes with a camera and this is what I came up with. Keep in mind that he goes like this non-stop all waking hours:

In case you can't tell, he's super happy.

John's twice a week therapy started last week. So far, so good. In our efforts to engage him more, we are spending more time on the floor playing with him, so of course he likes it.

We also went back to the developmental ped. He had videotaped John at our last appointment, and he had met with other experts to discuss John. He also talked to our neurologist. He offered to prescribe Risperidone, and thought it might help John to concentrate more. We're not interested in that right now, as one of the side-effects is a reduced seizure threshold. We're not touching anything right now. And, of course we're still holding out hope that he can remain seizure-free and that in itself will eventually help him.

Happy 5th Birthday!

John turned 5 years old on Wednesday. This birthday was especially good, as it was his first seizure-free birthday since he was 1. I've been scared to say anything, for fear of jinxing it, but John has not had a single seizure since his first Keppra dose 3 weeks ago. I mean nothing, not even a tiny head drop or eye flutter! This is the first time we've ever seen any clearly noticeable change with a drug. And this is dramatic. We know all too well that the seizures will come back, but it's just been so nice to have this break.
Needless to say, as long as this streak continues, we will not be changing anything with John's diet, herbs, or drugs for quite awhile.

In other news, we had John's last IFSP meeting to talk about his goals and his summer school. He didn't meet a single goal for last year, so all his goals got carried forward. We did manage to get 4 days a week of summer school, but not at the school we were pushing for. It's only 4 weeks, so it wasn't worth a long fight.

We also have a therapist coming to our house twice a week over the summer. Her job is to provide speech therapy, and teach us parents how to incorporate the therapy into our everyday lives. Our first meeting is next week.

Keppra + kindergarten

John's seizures continued to get worse, to the point he was having a 45-60 second seizure almost every day, and even started having multiple long seizures in the same day. So, we didn't really feel like we had any choice but to start John on the Keppra. He now takes 1.2ml twice a day. Man, we hated to do that, but really felt like we had no choice. Check back soon, and I'll update on how the Keppra is working.

We also got to go visit John's proposed kindergarten placement for next year. We were pleasantly surprised. This is an autism program, which I think will be good for John. The program looked good, the teachers looked good, and the teacher/student ratio was excellent. The kids that we observed all were more advanced than John, but I guess they are a year older. Some of them seemed significantly older, so I wouldn't be surprised if some of them got a late start with kindergarten.
Since it was an autism program, we were a little worried that they wouldn't be experienced with seizures, but that wasn't the case. They knew all about the VNS, diastat, etc.
They also had separate stations of snack time - one for normal snacks, and one gluten-free. Since John is still mostly gluten free, that will be a big help.

IEP

Since John turns 5 next month, he is eligible for kindergarten starting this September. So, we had his IEP meeting last week. The purpose of this meeting is to determine eligibility, document goals for the coming year, and determine his placement.
You hear a lot of bad stories about IEP meetings, and parents having to really fight for services for their kids, so Yoshie and I prepared pretty well for this meeting. We had all of our questions printed out. And, we had our goals written down for each area.
Eligibility is a non-issue for John. He's had so many evaluations, and he is currently in the ECSE program, so there was no question that he needed special services. His main diagnosis is still "Other health impairment" or something like that. However, we went through the autism evaluation during this meeting and it was unanimous that he also qualified as autistic. That label opened up a lot more possibilities as far as placement.
Thankfully, the goals that Yoshie and I had come up with very closely matched the goals that they had come up with. There were a few goals that weren't specific enough or weren't measureable, so we had them re-word those. Once it became very apparent that we weren't going to sign off on their goals without some challenge, I thought it went very smoothly. Actually, some of their goals seemed a little too optimistic. I'm all for striving for high goals so I was happy to see that.
As for placement, they actually said one of our options was to be included in the normal kindergarten class right next to our house, and to be pulled out 20-60% of the time for special instruction. I never, ever thought they would offer that. But, Yoshie and I both felt that John would benefit from a more structured, intensive type program. They agreed and we ended up tentatively agreeing to an autism program at a school that is pretty far from our house. I don't like the distance thing, but the school sounds good. We are going to go check it out next week.

We also asked about holding John back a year, and they said we could do that if we wanted, but since they were providing a "free and appropriate" option, that we would not be eligible for any funding. I asked about repeating kindergarten next year if that turned out to be a good option, and they said that we COULD do that, though I got the feeling they would frown on it. The truth is that we can also drop out at any time, and re-enroll next year. So, we decided to give it a try (though we haven't signed anything yet and could change our mind after seeing the school).

Since we got the educational autism label, we decided that we did not need or want the medical autism label. So, we were able to cancel his all day autism evaluation that was scheduled for this week.

John has taken a turn for the worse this week, at least as far as seizures are concerned. He had a 60 second seizure 3 days in a row this week, which we haven't seen for a long time. These are the typical tonic/clonic seizures. One of these seizures was at preschool again. This is the first real seizure that they have seen at preschool and it scared them. I don't think they were prepared. You can describe a seizure all you want, but you can't really understand until you see one. After his seizure, they mistakenly tried to keep him awake. Poor guy was totally exhausted when we got there. We're glad they got to see one. We have revisited what his triggers are, and we even changed his class time to the afternoon since most of his seizures are in the morning.

John got his stitches taken out a couple of days ago. Unfortunately the wound didn't close up very well, so he's going to end up with a permanent scar on his forehead. Oh well.

We also started to see a behavior psychologist last week. This appt. was scheduled for us, and we were told that his job was to coordinate John's services. But, he seems like he is more valuable as a resource to help us with John's behaviors, so I think that is how we'll try to steer the sessions.

Last week, we noticed on several occasions that John had blood in his stool. He had not been constipated or anything, so it seemed odd to us. Because of John's medicine, we take these things a little more seriously then normal.
So, we had to bring a sample to the doctor, and John had to do the routine blood work again. Since he was already getting poked, we had them also do a Felbatol level at the same time.
This place, despite being a pediatric clinic, didn't have much experience with kids like John, so they messed up the first arm and had to re-do. Now I remember why we usually drive 30 minutes for his blood draws.
Anyway, the tests came back normal and we haven't seen any more blood, so that is a relief.

And, his Felbatol level came back at 55. They claimed the "normal" level was 40-100. That's crazy. The neurologist says the normal level is 30-60, and I think that is actually way higher than most doctors would say. So, John's pretty close to his limit.

Felbatol, herbs

Even though we know we are still destined to try Keppra, we are making sure that we given mono therapy every possible chance first. So, we increased his Felbatol dose to 12mg on April 21. I know I've said it before, but I do believe this is the highest he can go on this drug.
It's so hard to say if it is working or not. He does not have nearly as many of the longer seizures as he was having, but he does continue to have daily small seizures.
John's behavior has gotten quite bad, and this could also be from the high dose of Felbatol. Who knows? If he gets frustrated these days, he will usually start tipping over furniture or throwing things. He also pinches a lot, and will sometimes just run up and attack you. He also spits all the time now, and pees in inappropriate places (i.e. outside at the park). We want to stop all of these behaviors before they get out of hand, but we're not having much success yet.

The 2 longer seizures that have happened in the last month were also different than we've seen before. At preschool, they say he made a strange sound for 30 seconds while his eyes were fluttering. We've never seen him make any sound during a seizure. The other time he appeared to just be sitting down, and Yoshie realized that he'd been sitting for awhile and when she got to him, he was out and his lips were bluish like he hadn't been breathing. He didn't show any obvious signs that he was having a seizure, though. You wouldn't even know unless you were looking at his face.

We've also continued experimenting with the Chinese herbs. Sometimes he seems to improve after changing the formula, but we still haven't found the magic potion yet. The herbalist remains very caring, thoughtful, and optimistic, which is refreshing.

In the past month, we also tried a new speech therapist that was closer to our house. She thought John needed OT before speech. We've heard this before, and we've heard the opposite. We think he needs speech, so this new place might not work out.

A lot going on

I haven't posted in a long time, but not because nothing has been going on!
I'll try to catch up over the next few days and add some pictures, but the gist of the last month is:

• We increased his Felbatol to 12ml/day.
• He's only had 2 longer seizures in the last month, both of which were different than we've seen in the past, and one of which happened at preschool.
• Daily small seizures continue.
• Behavior has gotten far worse. We don't know the cause of this.
• We built a climbing wall in our living room! (pics coming soon)
• We spent 6 hours in the ER where John ended up getting some stitches in his forehead (not seizure related for once)
• John had blood in his stool, which worried us for awhile. But, the tests came back showing nothing was wrong.
• We had his IEP meeting and we got our tentative placement for the next school year.
• Not John related, but it was confirmed through a stress test that I have some sort of a heart abnormality when my heart is pushed to it's limit... :(

Check back soon!

We had John's Felbatol level checked last week. The normal range is 30-60, and John was at 46. Hmmm. I don't understand how he can be so far above the normal dose, and still have a blood level that is right in the middle. I guess all the running around he does keeps his metabolism in high gear. It's good news, as far as we are concerned, as it means we can go up on the Felbatol and can delay the Keppra for a bit longer. So, we increased his Felbatol to 11ml/day last week. We'll increase it again to 12ml later this week. As always, we see the scratching and sleep problems. But, those things should subside with time. We've learned to accept the hyperactivity that comes with this drug.
We've seen quite a lot of smaller seizures this week, but haven't seen a big one in 7 days now.

Yoshie took the kids to the zoo over spring break. They were standing in line to get the tickets and I guess John decided that was a good place to go to the bathroom - right in the middle of the crowd of people. He's been so good about going to the bathroom. I'm not sure what he was thinking. I suspect these embarrasing situations are going to get more numerous as he gets older. Hopefully we can put a stop to this sort of thing before it gets out of hand.

Over the past month, we've seen things pretty much remain the same. His big seizures (90 seconds) come every 2-7 days. His pattern of having them at consistent intervals appears to be done, and now we just never know when to expect one. He still has at least a couple of small seizures every day too.
We increased his Felbatol to what we think is his max a couple of weeks ago. He's now taking 10ml/day. We got his level checked on Wednesday to see if there is any chance we can go higher. We won't find out the results until Monday.
John remains happy and full of life. He's more hyper than ever, and as he grows it gets harder to take him places. His new thing is tapping everything he walks by. I think he is interested in the different sounds. He hits absolutely everything, including cars and even other people.
He continues to be a little gymnast, and turns himself upside down whenever possible. Yesterday, our blinds were all the way up. He was able to grab them by standing on the top of the couch. Then he preceded to walk up the window while holding on the the blinds. By the time I got to him, he was hanging upside down from the top of the window.
We got his speech evaluated at OHSU. I think this was his 4th speech evaluation. In any case, he of course qualified for their speech program and they also thought he would qualify for the autism program. He can't get the autism evaluation done for a couple of months, though. We also requested an evalution be done by the ECSE for autism, in hopes that he could get more therapy through them. They reluctantly agreed to do the evaluation, but we haven't gotten anything scheduled yet.
He's been going to the new OT and speech therapist once a week. It's been good, but it's a long drive for a 1 hour session, so we are also going to try a place closer to our house. We suddenly have a lot of options. Our strategy is to try them all and stick with the best. Still, these therapies are all just 1 hour a week. We're still hoping for more than that.
Our neurologist is both very busy and very popular, so our next appt isn't until August! We are probably going to have to find another neurologist, but I don't think we have a lot of choices.

John's cycle of having a bad day followed by a handful of good days has continued.
All last week John had a new game where I would hold him by his feet and he would swing back and forth under my legs. He got to the point where he wanted to do it all the time. And, he got quite good at throwing his weight around so he did all of the "swinging" himself. He looked like a little gymnast. Last Thursday, I noticed that he quit moving while doing this, and sure enough he had gone into a long seizure while upside down. I can't help but to think that I contributed to this one. It was 5 days after his last one, so I guess we should of expected it, but still it hits us hard every time. Since it was clear that he is not going seizure free with his current medicine, we decided to increase his dose the same day. So, he's been at 3.5/2/3.5ml of Felbatol since then.
We had 4 good days after that, including another seizure-free day. On the 5th day, he had another long one in the morning, right on schedule. This one was almost 2 minutes, so probably the worst one to date. He had another 75 second seizure in the evening. So, it appeared that the increased Felbatol was only making him worse. However, we haven't seen a single seizure of any kind since then which would make this his longest seizure-free stretch in a long time. We're expecting the next one on Sunday, and we'll adjust meds depending on how that goes. We can go one step higher before giving up.
The increased drug has affected his sleeping. He's been a bad sleeper since starting Felbatol, or maybe even before that. But, it has gotten worse. We're crossing our fingers that this will get better with time.
We finally had a session with a new speech therapist yesterday, and will be going there once a week for awhile. Yoshie still does daily therapy sessions too. But, he still needs more speech therapy, so we're investigating other options as well.

Johns situation continues to change, mostly for the better. Because of this, we haven't made any drug changes yet. It just seems like we need to wait for everything to stabilize before making any changes.
Since my last post, John started in this predictable cycle with one long seizure every 3 days. It was like clockwork. How strange. On the off days, he would just have a couple of very small head-nods. For whatever reason, he didn't have a big seizure last week on day #3, but picked up right where he left off on day #6 with a 95 second seizure. I'm beginning to wonder if he actually did have a seizure on that 3rd day in his sleep.
We also saw our first seizure-free day last week. He's come close many, many times over the last couple of weeks, but we've only had the one day where we didn't see any seizure activity.

Keppra?

We got a little snow around here last week, and the appointment that we had waited months for was canceled. Thankfully, we were able to reschedule quickly. But, in the meantime John had a pretty rough time. He has a long seizure almost every morning now, and sometimes has a 2nd one in the early afternoon. We've seen several over a minute now. These wipe him out for a long time. He sleeps for an hour or two, and then is just in a bad mood for another hour or two. The flip side is that his smaller seizures are rapidly diminishing. In fact, he has only had a couple per day lately. And, every now and then he'll get a day without a big seizure and only a couple of small ones. It seems possible that he could see a seizure free day one of these days.

We were able to get in to see the nurse practitioner a couple of days ago. She wasn't very impressed with the video that we had. I guess she's seen her share of seizures. We were concerned about John turning a faint blue with his seizures these days and she just said that this was normal. She says we don't need to worry unless he turns VERY blue over his whole body.
We asked about the tropic acid levels, and she just snickered. She's obviously not a fan of alternative therapies. She tried to backtrack a little but it was obvious she wasn't interested in pursuing that.
We also asked if we could get another overnight EEG so we could catch one of these big seizures. She thought it was a good idea, but after consulting with our main neurologist, they decided it wasn't needed. I don't understand the reasoning, and I can't help but to think that they just didn't have a convenient opening. To me, it really feels like they don't know what else to do for John.
He got his VNS turned up again. It's now at 2.25mA, and the magnet is set at 2.75mA. It doesn't bother John, so I guess the only downside is that the battery will wear out a little faster. It's worth it for the chance at better control.
We talked about what to do next. She mentioned going back on Lamictal, but we told her we weren't real comfortable with that. So, we are giving the VNS a little time, and will increase his Felbatol if there is any room to go up. Along those line, she ordered the standard bloodwork that goes along with Felbatol.
The big positive that came out of the appt. was her apparent disbelief in the amount of speech therapy that John is receiving. Finally someone that sees it our way. I guess her other job is with the Child Development Rehabilitation Center, so she has a lot of experience with this. She says John needs a lot more speech therapy (duh!), and she got the ball rolling on that.

Today, we got the blood work done. John had a 75 second seizure on the way to the lab and woke up just in time to get poked. So, he didn't have a very good morning. Most of the results are already in and were all fine. We'll have to wait a couple of days before we get the Felbatol level.
In the meantime, she and our neurologist discussed drugs and they feel that keppra is the logical next trial. Yoshie and I have been looking at Keppra for a long time and also feel this is a good thing to try. It's famous for causing behavior issues in children, but there are some things we can do to combat that (B6, slow titration, etc.). We hate, hate, hate to introduce another drug, but these seizures are scary and we don't feel like we have much of a choice.
We'll wait to start until we've exhausted options with the Felbatol, but I'm fairly certain we'll be trying it soon.
Here are some positive studies regarding Keppra. I won't post the negative ones (mostly behavour issues).
PubMed1
PubMed2
PubMed3

The never-ending roller-coaster ride continues on. John had a couple of good days. He went almost 2 full days without a big seizure (though still lots of minor ones). Then he had a big one again yesterday. I just don't know how big, as I missed it. He was crouched down getting some balls from under the sofa as he often does. It was quite awhile before it occured to me that he hadn't moved in some time. He was not seizuring when I got to him, but he must have just finished, as he was still limp and completely exhausted. He slept for an hour, breathing very deeply the whole time. Then, he had another tough hour after that before recovering and being back to his old self in time for Maya's 8th birthday party! His big seizure was at 1:30pm, and we only saw one other very minor seizure the rest of the day. So, as usual, he seems to release the same amount of seizure energy in any given day, whether it comes in lots of small seizures or just one big one.
We have an appt. with the doctor tomorrow to discuss where we go from here. The options are 1) increase the felbatol, 2) increase the VNS settings, 3) add some Lamictal back in, or 4) start a new drug. I think we'll suggest #1 if we can do it safely, then #2. I'm not sure we're ready to reintroduce the Lamictal, but we may end up having to do that in the end.

He's also starting music therapy this week. I think he'll enjoy that.

We're going to slowly start dropping the herbs and the dietary restrictions, one bit at a time. They haven't proven to be beneficial, at least as far as we can tell. Just how we do this will be dictated by what happens at the doctor appt. tomorrow. We are trying to do one thing at a time, so we know definately what the culprit is if something happens.

John had a seizure of over 1 minute on Friday, along with his normal couple dozen of small seizures. That was the longest we'd seen in a long, long time. Over the weekend, he also had 3 seizures of around 10 seconds in length. So, that obviously isn't good. But, the overall number of seizures has gone down to about 15 per day. And, his afternoons and evenings have been really great. We think he is understanding more and more. So, longer seizures, but likely better development. Good trade-off or bad? That depends on when you ask me!

We had a meeting with his EI teachers today. He isn't crying at all at EI anymore, which is just great. He also isn't learning anything, and those meetings often seem overly depressing. But, the fact that he goes there without crying and seems to enjoy it is a huge improvement as far as I am concerned. He is keeping his 1 on 1 aide, which is good news of course. John had a 5 second seizure during the meeting. I think it was a bit of a shock to the teachers, as they had only heard of the longer seizures and haven't had to experience one yet. All discussion stopped and we had to revisit what to do in the classroom if he should have a long seizure. I'm really glad they got to see one, even if it was a minor one.

John has been at 1000mg of Felbatol for 10 days now. The general range for kids and Felbatol is 15-45mg per kilogram. John is 16kg, so this would mean his range is 240mg - 720mg. So, he is already way above the normal maintenance dose. But, we don't see much in the way of side-effects, so I wouldn't be too surprised if we end up going higher still. We'll find out at our appt. next week.

I mentioned that I caught a video of John having a seizure. It isn't that pleasant to watch, but I thought I'd post it so I can get the opinions of others familiar with seizures. This seizure seems mild, with almost no convulsing. He doesn't even drop his spoon. He even blinks during the seizure. Does this still look like a generalized seizure? It probably is, but it just seems different than the long seizures he used to have. The video can be found here (6mb).

John is now on his maximum dose of Felbatol, and he's still having many smaller seizures and some bigger ones. He was having a large seizure every morning, so I followed him around with a video camera on Dec. 31, hoping to capture a seizure so we could show the neurologist. After about 20 minutes, he sat down to eat and I turned off the camera. In that very instant, he went in to a seizure. I quickly turned on the camera and got the last 20 seconds or so of the seizure, but this one was about 35 seconds which is the longest we've seen for awhile. After that, he went 2 full days without a longer seizure so we were really hopeful that the Felbatol was finally working. However, he did have another one last night and a couple today. These were more of the 10 second variety, but still frustrating. I guess the Felbatol is not going to be the answer. I don't really know where we go from here, but we have an appt. in a couple of weeks so we'll find out then.
Everyone is back to school and work. John did OK his first day back, but did have a lot of "head drops", and we know they don't catch everything. I don't know if he'll lose his 1 on 1 aide soon, but we certainly hope not. Our meeting with the EI team before the holidays got canceled, so we'll be meeting again to discuss.

John continues to have longer seizures on most days, but we haven't seen any over 10-15 seconds since last week.
He had a great Christmas Eve with no longer seizures at all. All of the excitement of Christmas led to 3 longer seizures, though.
I guess we're getting used to them now. And, it's a big relief that they haven't progressed to the point they were last year. So, far he has been able to bring himself out of them within 20 seconds. Or, maybe the VNS magnet is helping to bring him out of them.
We think John is doing better cognitively. He's still not communicating much, but it appears that he is understanding more and more. I also witnessed him sitting down and turning the pages of his book for probably 5 minutes. For a kid that usually can't concentrate for 5 seconds, this seemed like a big step. This could be because of the increase in Felbatol or the removal of the Lamictal. As long as the seizures don't get worse, we're not going to reintroduce the Lamictal. We'll trade seizures for development, up to a certain point.
We're scheduled to increase the Felbatol again next week. Hopefully, we'll see even better things with that.

Santa brought John a bag of 100 balls, which he was really excited about, though he seems to have gone back to his old set of 5 or 6 balls for the most part. Not sure why that is. Santa also brought the kids a big realistic remote-controlled dinosaur. We were worried that it might scare John, but he pets it just like a cat.

The battery was fine. So, the increase in seizure activity means something else is going on.
We asked the doctor if maybe John just needed a low dose of Lamictal to control the longer convulsive seizures. Even though it is not considered therapeutic, he says that he sees cases all the time where a low dose of Lamictal helps kids. So, we may end up going back on a low dose of Lamictal at some point. Before we go there, though, we want to give Felbatol a shot at a higher dose, and then try playing with the VNS settings to see if we can get better control.
We increased his Felbatol dose from 6ml/day to 7ml/day a couple of days ago. We'll see in the next 4-5 days if this has any effect.
The doctor also said that since the VNS doesn't seem to have any adverse effects at all at the current setting, that we can certainly try some stronger settings with that. He was ready to update the VNS settings yesterday, but we wanted to hold off since we had just increased his med doseage. We did increase his magnet ampage to 2.5mA, though. Even at this level, it doesn't seem to bother John at all.

John had 3 longer seizures yesterday. Still only about 5-8 seconds each, but with convulsions. The good news is that the seizure last night stopped immediately with the VNS magnet swipe. Maybe the VNS still offers us some hope!
As of 11:30 this morning, I've seen maybe 10 small "normal" seizures, but no larger ones. That is good news, as we've been seeing a larger one almost every morning lately.

Well, John has continued to have lots of little seizures, and at least 1 larger seizure in the morning. This morning he had a 15-20 second seizure that really scared us (and him). This was his longest seizure in a year and a half. His eyes were rolled back in his head, he turned pale, and was convulsing. Maya even offered to call 911. What a good sister! The magnet didn't seem to help. But, thankfully he came out of it on his own. So, we're back to close monitoring of him, and keeping the magnet, diastat, and stopwatch close by.
Over the last couple of days, we have noticed that the magnet doesn't seem to stop the clusters as it used to, and it didn't seem to have any effect on this bigger seizure. I have tried to make him vocalize after swiping the magnet to see if we could get some indication that it is working. We just can't. The truth is, we have never been able to tell when it was on. But, I also know based on the charts that John's battery could die any day. We're crossing our fingers that it is now dead and this is why his seizures have gotten worse. We were able to get a quick appt. to check the battery tomorrow morning, and I'll update after that.
In the meantime, we are increasing his Felbatol again starting tonight.

John's seizures have continued to get worse. Yesterday he had two longer seizures in the morning that scared me enough that I took the day off work. Most of his seizures are still short, though he routinely has 80+ a day now that we see. So, we needed to make a change. I called the neurologist and we got the OK to increase his Felbatol dose. He was taking 5.5ml/day, and we increased that to 6ml/day. It's not much of an increase, but John didn't have any of the large seizures this morning so maybe it's helping. After 2 weeks, we can raise it to 8ml/day. That would be a big jump, and probably his max doseage of this med. We really hate increasing his meds, but he just wasn't doing very well and we can't ignore that.

We went to a meeting the other day about his transistion in to kindergarten next year. We didn't learn too much. He'll obviously be in a "self-contained" classroom, and we won't know where that is until next year. Yoshie is considering home-schooling John next year, but I think we'll wait to see what they offer before we make any decisions.

John also got his speech evaluation the other day at the therapy place. They thought he was a delayed 2 year old. Imagine their surprise when they found out he was 4.5! We already know it, but I think even the therapists are a bit taken back by the severity of his delays, especially since he looks like a normal kid. They were really surprised to hear of our trouble with getting adequate speech services through the county. But, they also said we'll likely get a lot more next year when he is school age. In any case, John was too delayed to even do any of the tests. (ie. He can't point to a kitty, or a ball when asked). But, she was very good and saw some potential in John. We'll be starting to take John to see her and the OT once a week pretty soon.

We are still continuing with the stringent diet for now, and we have just added some more supplements to the mix. We are also continuing with the herbal mix. The herbalist is trying everything she can think of and calls us frequently to assess how things are going. She suggested that we might want to go to China for more advice, but I don't think we'll be doing that. :)

John seems to be understanding and vocalizing a little better this week, but the seizures are getting worse again. Both the number and strength of the seizures has been getting worse since my last post. We're not sure what to do about it. We don't want to return to the Lamictal. For now, we are just waiting this out and hoping it gets better. If it gets any worse, we will have to do something, though. He's close to falling with some of the seizures again, and we definately don't want to go back there again.

We went to an evaluation at a private therapy place. The lady that evaluated him was very good, but she was an occupational therapist. We're going back for another evaluation with the speech therapist next week. It seemed like a nice place and I hope it works out.

We got the Santa visit out of the way early this year. John still doesn't know Santa from any other person, and it's pretty tough to get him to sit for 1 second to get a picture. Yoshie sits him there and darts away and hopes that he makes some expression that is acceptable. It looks like he's smiling here, though it was really a whining face.

There is an interesting show airing on PBS that talks about epilepsy. We watched it last night and it covers some of the treatments that we have tried (VNS, keto diet, drugs). You can see it online if you have a fast connection:

http://www.epilepsy.com/media/HBHMHQ.asx